Page 44 - Branch Leader Guide

Branch Leader Guide

Part VI – Samples and Examples

Sample Press Release

For immediate release
For more information, contact: [xxxbranchleader, be sure to give email and phone]

Xxx CMTA Branch
Announces All-Star xxx for CMT

(Placexxx)—The xx Branch of the Charcot-Marie-Tooth Association (CMTA) announced
[xxxdate] that it will hold a [xxxWalk/Run/Swim] 4CMT on [xxxdate] at [xxxplace].

The [Walk/Run/Swim] is one of dozens of All-Star Events being held nationwide to mark
CMT Awareness Month, which takes place each September. Charcot-Marie-Tooth is a
progressive disorder of the peripheral nerves that causes people to lose the normal use
of their feet, legs and hands. CMT affects some 2.8 million people of all races and
ethnicities worldwide, though many of them are misdiagnosed or not diagnosed at all.
Raising awareness about CMT is particularly important given that so many people are
unaware that they have the disease.

CMT symptoms include: Foot deformity (very high arched feet) and foot drop (inability to
hold foot horizontal); a slapping gait (feet slap on the floor when walking because of foot
drop); loss of muscle in the lower legs, leading to skinny calves; numbness in the feet;
and difficulty with balance. Hands and arms may also be affected. CMT is not fatal, but
it is currently incurable.

The CMTA is a patient-led association that is aggressively searching for a treatment for
CMT, putting together a group of top-flight researchers and experts and directly funding
their work. The CMTA launched the Strategy to Accelerate Research, or STAR, in 2008
to capitalize on breakthroughs in genetics and dramatically speed up the pace of CMT
research. Since then, the CMTA’s STAR Initiative has made great strides toward
developing treatments for CMT.

For more information about CMT, please visit www.cmtausa.org.

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